Just wondering if any of you could point me in the right direction. I have been diagnosed with Lupus &Sjgreons for 19 years and all that time I have been on Hydroxychloroquine twice a day , plus for 17 years of that time I was on varying strengths of Steroids.Long story short managed to ween myself off steroids( eventually after a long drawn out painful battle )and was put on Azathiropine for the last 18 months. Started with blood tests to check my neutrophil levels once a week then onto once a month. Over the last 18 months my neutrophils held steady and ok but recently they have become unstable. I have been feeling under the weather recently and becoming very dizzy and just feel off but put this down to the usual mixture of Lupus symptoms or so I thought although it just feels different to the usual mixture . I went For my usual monthly blood test and received a call from Rhumatology doctor a day or so later saying she was a bit concerned did i feel ok as test had showed neutrophills were on the low side? . I explained about the dizziness and feeling strange a bit more tired (i didnt think it possible!!)than normal. I was told to have a repeat blood test in a week and to call if i felt at all unwell. Half way through the week i felt awful and the dizziness had become more apparent and the feeling of just being out of sorts increased so i called. Rhumatology told me to completely stop Azathiropine and my Hydroxychloroquine. But to be aware that it may bring on a flare, but to keep myself dosed on painkillers, not great but ok . As expected it all started to kick off my joints stiff and hurting and......... well no need to explain to you guys and gals you know how the story the goes sadly x. I had blood test Friday & today Sunday I get a call saying the neutrophils have dropped again .They were 1.1 but now they are 0.8 and I am Neutropenic !!! I have been told if i show any sign of infection to go to A&E or see an emergency doctor but in the meantime go for another blood test this coming Friday. Now as I say I dont want to make a fuss and I am trying to deal with it but I am feeling increasingly extra tired with a headache, going hot and cold( no temperature i checked ) keep feeling dizzy and out of sorts, my joints stiff and swollen & complete body hurting like hell!!. I feel ill yet no signs of infection as such, so i dont feel I can bother anyone or be a nusiance to an already stretched NHS. Yet my neutrophils are very low and i do feel really unwell . I have to wait until my next blood test results which will be next weekend with no lupus or Sjgreons meds, flaring and on painkillers. I am so fed up and feel like c**p.Just wanted to know what you fellow Lupies think I should do if anything ?
Love and Light
Angela xx
Written by
Mrsdoozer
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I am very sorry to read your story. You aren’t making a fuss!
To leave you in this way is frankly outrageous!
I think you should phone your rheumatologist and complain that you cannot manage any longer like this, or get your GP to phone on your behalf! If you have a sympathetic GP, go and talk to them!
When I was put on AZ, my Hg crashed and was very ill so I understand. You may be admitted so you can be treated under their watchful eye. I wasn’t given any replacement treatment for a month because Az has to clear your system!
Please let me know how you get on with contacting the doctor.
Thank you, I will call my GP. I am sorry to hear you had trouble taking Aza as well. I hate making a fuss but sometimes I think it's necessary. I think I am hesitant as I do not have an infection to show so I tend to get fobbed of by Rhumatology, with just take your painkillers and wait it out seems to be their moto. Which is OK for them as they are not the ones that struggle to move or sleep as my joints are so painful there is no respite and the more tired I get the harder it becomes to deal with. I will let you know how I get on and thank you for your reply
I wanted to reassure you that this happens with AZ & takes a month or so before it is cleared via your kidneys. In some people, it isn’t excreted and hence your blood count is what it is!
You are not the only one who doesn’t want to make a “fuss”! You are not! Don’t let a junior doctor fob you off! Demand to see the consultant! You have a right to be given the best care.
I am assuming you are in the UK?
Look after yourself and I hope you get the care you need and deserve!
Hi Thank you for answering me and giving me some support its much appreciated x
I woke up this morning having had a disrupted night with joint pain and generally feeling unwell. Having a slight sore throat and feeling grotty and dizzy my wonderful long suffering husband said come on lets get you checked out. Long story short I ended up at a walk in clinic and then sent to a Medical Assessment Unit at Q A. After a check over and supplying a urine sample turns out I have a urine infection, doc seems to think I also have a cold / virus . He told me that at 0.8 not to worry about my neutrophil level they only worry if you are a cancer patient!!! He told me I look to well to be suffering from Sepsis but that they would run bloods to check . However it soon became apparent I have a urine infection that I was unaware of , that would explain a lot. But Rhumatology did say if I felt unwell to seek urgent medical advice and they did ask me if i had any urine infections go to hospital.Sadly i was made to feel that i was worrying over nothing by the doctor and made to feel a bit stupid !! I had an emergency blood test and pleased to say now my neutrophils are sitting at 2 which is good news and a move in the right direction. I still feel like i have been run over by a bus and throat feels like i have swallowed razor blades my joints are stiff and ache but needless to say doc was not interested as thats no what i was there for, shame they dont treat us whole rather than just one bit. He said i cant comment on that as Rhumatology is a complex field and he was not qualified to comment on my meds. However i do have antibiotics to take and hope I will soon feel a little more human.I came home from hospital and went to bed and slept for a couple of hours I was exhausted. Tommorrow I will ring my Rhumatology helpline and ask what they are going to do regarding my meds as I am struggling with no longer having my hydroxychloroquine 400mg a day for 19 years to nothing is a bit of a shock to the system the aza obviously needs looking at and maybe an alternative needs looking at as it has been very unstable over the last few months,
Thank goodness your husband took control. My husband had several UTI’s and they are dangerous. Once over this you must keep your fluids up. I use Sprite with No Sugar it really helps me drink more. I now have my husband on a supplement called D-Mannose. My friend who has cancer used it when all else failed. It is just Cranberry kernel but it really works. Keep pushing to get proper attention, sadly so many of us have to do this.
Hi thank you:-] I will buy some Sprite tomorrow and try it. I hope both yourself and your husband are doing well. I was surprised to find out i have a urine infection as I had not had any real symptoms but it probably explains the hot and cold flushes if nothing else!
I am just so glad you have the antibiotics. There are so many sugar free drinks out there now so you should find one to your taste. Sprite did one last year with lemon and cucumber - I eat a lot of cucumber in the summer as we lose so much fluid - I keep chopped apples in a bag for journeys or melon. They all help without having to drink. Avoid sugar. I have improved greatly since I gave up cakes biscuits and white bread!
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